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Remission from Fibromyalgia?

I don’t talk much about Fibromyalgia (FM) because it’s been so many years since I had it. A topic I read about even less, is the remission from this syndrome. But I still remember what it felt like and what it entailed, particularly before its supposed symptoms got muddied by research done on people who have innumerable other conditions, or co-morbid conditions.

I suppose I’ll start with an explaination of what is it/how it feels. Then I’ll explain what I did to help my own case, that eventually led to a remission.

Fibromyalgia is a a pain syndrome that is usually triggered by a stressful event, such as a car crash, surgery, accident, severe infection, or another illness worsening/starting; more or less, it’s the consequence of something else. The pain is primarily in the muscles, and the tendons that support the joints, lending to severe pain and joint stiffness, but without inflammation. The syndrome does not actually damage the joints or muscles–it just feels like it! There is an extreme sensitivity to pressure (allodynia). Things that would normally not hurt, such as getting a gentle hug, become extremely and lingeringly painful. The pain never stops, and is absolutely everywhere, all the time, but may focus more around the tender point locations necessary for diagnosis. Someone with FM will be hurting when they are sitting, standing, and lying down. Temporomandibular joint disorder (TMJ) is very common, and a major contributor to headaches.

Sleep problems include an inability to fall asleep, but particularly staying asleep. Someone with FM may wake up every hour, all night long, without anything to help cure the root of the problem, which is the brain’s inability to conduct normal sleep waves. FM is thus also accompanied by a great degree of fatigue, that may or may not be managable. Cognitive problems are multiple and very prominent, including things like an almost complete lack of short term memory, working memory, any ability to recall the names of every day items, and silly things like placing the television remote in the freezer and the frozen peas on top the entertainment center. (Or pouring your milk in the trash and the tea down the sink… I may or may not be speaking from personal experience…)

Other symptoms include tingling and numbness of the extremities (your arms and legs), muscle spasms, cold sensitivity (someone with FM can always tell when the weather is about to change), and a high rate of restless legs syndrome. Stress is not the cause of fibromyalgia, but stress exacerbates any chronic disease, so proper management of stress is essential to keeping your pain, fatigue, and sleep problems as mild as possible.

Fibromyalgia is not an inflammatory disease. It is also not a progressive disease, though symptoms wax and wane over the course of several months, and can be disabling. If you are experiencing inflammation and/or illness progression, see another doctor for other illness possibilities besides fibromyalgia, which may only be a symptom of another, more serious disease process or underlying infection.

We know Fibromyalgia can disappear when it is associated with Myalgic Encephalomyelitis. But what about otherwise? Does treating the main disease causing the FM, make the FM go away? That certain wasn’t the case when I fell ill; my FM stayed when the M.E. went into remission, and went away after I got Lyme disease! What makes this even more difficult to determine, is its consistent over-diagnosis. For instance, there are probably thousands of people who have been diagnosed with FM who actually have M.E., who just had the unfortunate circumstance of being diagnosed with FM first, and just stopped looking for other explanations. And nearly everyone I know with Lyme disease initially had a diagnosis of Chronic Fatigue Syndrome or Fibromyalgia (or both) before they found out the actual cause of their symptoms; I wish I were only exaggerating!

I’m not sure where I fit in with that group. Things happened to me in the reverse order that would otherwise “make sense.” But I will write about that next, in a post describing the differences between CFS, M.E., FM, and Lyme disease.

For right now, I want to talk a little about how I treated the syndrome, in case that might be of help to others. I don’t claim these to be the cure–I think it most likely remitted of its own natural accord–but they did help me immensely, and I could always, always tell when I was forgetting one of them. Maybe someone else will also find relief?

Magnesium.

You’ve probably read about this all over the internet, right? Sure you have. Well, it’s not just hype. I’m not going to pretend to know the mechanics behind why it helped, but daily supplementation with magnesium not only reduced my Migraine attacks (a condition I was born with) from twice a month to twice a year, but greatly reduced my muscle pain. I’ve read many an article overanalyzing the right “type” of magnesium to take for Fibromyalgia, but I can only tell you this: I bought the plain ole Magnesium oxide with chelated Zinc from Walmart and it worked without fail. One important thing to note before you dismiss this one: I’ve always had normal serum magnesium in blood tests. The amount in your blood is not an accurate way to determine the actual amount of magnesium in your body.

Foam mattress topper.

This might should actually be number one… It’s that important. You have to understand that fibromyalgia is made worse by contact (in general, really, but especially) with the pressure points…which, if you’ve been diagnosed, you might know are practically everywhere. It should then be easy to grasp why relieving this pressure whilst sleeping is absolutely essential to easing your symptoms, especially when you’re pressing on them for eight hours at once. Invest in this, no matter what. You will not regret it. I couldn’t sleep on something that didn’t have my two inches of bed foam for even one night. When I would try to visit friends and family and sleep there, I would wake up after a couple of hours in excrutiating pain, from the pressure on these tender points. Sleeping better will also help your cognitive abilities (memory and mental functions) improve.

Also, for TMJ-related pain and/or head pressure, invest in an amazing pillow. You deserve it, and you need it! It’s all about support and relieving pressure on a body that interprets pressure as pain. I’ve personally been using Simmons Latex Foam Pillow (I cannot stand memory foam) and mine lasted 7 years before needing replacement–you will get your money’s worth!

Protein.

You know what honestly made me start increasing my amount of protein? It was back in the day when Montel Williams still had Sylvia Browne (a world reknown psychic) on his show on Wednesdays. Every time someone mentioned having fibromyalgia (which was largely unheard of back then), she’d tell them to eat more protein (and less sugar). I figured, it couldn’t hurt me one bit to try it, so I did. And I’ve been doing it ever since. (I’m not vouching for her abilities or inabilities one way or the other, but that information helped me. I now also know that people with infections requires 50% more protein in their diet than those without, so that’s another reason for me to continue.) I made a pact with myself to get an adequate source of protein every single day for two weeks to see if it made a difference. Obviously, it did! For me, it was chicken, and luckily there are hundreds of ways to prepare it so I didn’t get bored. For vegetarians it might be soy, or something similarly protein-rich that contains all essential amino acids, but I noticed I had more energy and was not as weak. I highly recommend you try the same test.

We all know too much sugar is bad for us. I switched to honey instead of sugar in my coffee, and cut down on my intake of white-flour, empty-calorie foods (which admittedly wasn’t very difficult since I didn’t eat a lot of that stuff to begin with). Honey is structurally different than sugar, containing mostly fructose and glucose (instead of sucrose), so your body can use more of its properties for energy instead of donating it to your fat reserves. =)

Aloe vera.

If I had a dime for every person who told me “thank you” for telling them about this one! Fibromyalgia is, without fail, associated with some degree of irritable bowel syndrome; if ever a case existed without IBS, I’ve never heard of it. This stuff will help if your digestion is too slow or too fast (and most IBS sufferers cycle in-and-out throughout, sometimes, even the same day). I’ve had people tell me they’ve even been able to start eating foods they previously couldn’t touch! Hopefully, if you try this, you’ll have the same reaction?

Puritan’s Pride recently changed their aloe vera gel capsules, and I’ve noticed that even though the strength hasn’t changed, I now need two of these daily to give me the same effect as one of their old-model capsules. :\ But I’ve been taking one (well now, two) a day for at least eight years. It has many other health benefits, but mostly, it’s to protect the intestinal tract and help keep things from acting out, whether one extreme or the other. Note that it’s very important to consume the inner aloe vera leaf gel, not just the ground leaf, like you may also find if you’re searching for an aloe vera product. People have also told me they get relief from drinking it, but the gel capsules are much simpler, if you ask me.

Flexeril.

This is one of the first things your doctor used to give you for Fibromyalgia before Lyrica came around. It’s a muscle relaxant that some say is similar to tricyclic antidepressants (but you’re not taking it to cure some delusional illness belief), while others say it’s more similar to cyproheptadine (which is typically an allergy medication that has an extensive list of other uses)… My vote is on the latter, because I’m extremely sensitive to it, like I am to cyproheptadine. The point is this: People with fibromyalgia do not enter the restorative stage of sleep as often as healthy people, so whenever you do, you have to make it count.

Flexeril (and other similar drugs, but this is the one usually handed out) makes it to where your muscles relax during those rare restorative sleep stages, allowing your body to heal more than if you hadn’t taken anything. The difference is noticable, particular when you’re in one of those “waking up every hour” phases that leave you a zombie during the day, and contributes substantially to the “fibro fog” part of the illness. You may not be able to keep from awakening fifty times a night, but at least you’ll get the most out of whatever sleep you do get. Now, I eventually had to switch to Robaxin (methocarbamol, another muscle relaxant) because I couldn’t tolerate the sedative effect of Flexeril, but just be sure to try something.

Exercise daily.

If you’ve made it this far down the list, I hope you’ll stick with me through this section! I cannot stress enough (1) how much exercise is essential for fibromyalgia, nor (2) how difficult it is to get started. Second to no other treatment does it improve fatigue and stamina, and only second to the mattress topper did it improve my pain (i.e., it helped a lot). I could always feel my symptoms worsen when I hadn’t exercised for a day or two. The type of exercise I’m talking about is, for all intents and purposes, graded exercise therapy. This is the type of exercise that studies claim helps chronic fatigue syndrome, but don’t mistake this for being a treatment for M.E., which again, is not the same as CFS. I absolutely could not exercise until my M.E. began to go into remission. Only then was I able to very slowly start doing exercise, gradually adding on more and more activity.

The first goal is to have fifteen minutes of activity a day. At first, I could only walk laps around my house in five increments of three minutes each, spread out across the day. Next, I moved on to three increments of five minutes each (i.e., more activity at once). Also, every morning I would sit up, and very slowly rotate all of my joints, to fight the terrible morning stiffness; it was practically the only way I could move, particularly during the colder months. Then I started adding in the gentle stretching, using a similar method: First, five minutes a day of very slow, gentle stretching, only as far as my muscles could go, and eventually I was able to stretch for a full fifteen minute routine at once, with some music to make it more enjoyable.

Do not try to do it all at once at first, nor force yourself to stretch like a “normal” person would–you are not normal! Even with this graded approach, it was still unbelievably painful, and followed the next day by a huge increase in pain. But with fibromyalgia, you don’t stop just because it hurts the next day; you cannot, or you will lose whatever progress your body has accomplished. The first two weeks were absolute hell. I was exhausted and beyond sore the next day, and moreso the day after that, and so forth, until “the pain stage” (as I not-so-affectionately call it) finally passed. Then I started to reap the benefits of my very hard labor, and noticed that my symptoms were actually worse if I didn’t exercise. (Only someone with FM can understand how mind-numbingly painful it is just to try and stretch for five minutes at a time!)

Important: This is the exact opposite of treating myalgic encephalomyelitis, and in my opinion, the biggest proof that M.E., CFS, and FM are not the same thing. If your muscles become inconsolably weak and begin to fail the next day, and worser still every additional day to the point that they may even literally stop working, you have more going on than “just” Fibromyalgia. Additional exercise will causes illness progression in M.E., so STOP. (Also possible, if not M.E., is that you may have Lyme disease and/or Babesiosis, chronic viral infection, hyperthyroidism, et cetera; i.e. other illnesses that cause muscle weakness in response to exercise, with no eventual benefit.) But this is NOT the same as experiencing more pain or fatigue like you would with Fibromyalgia, because let me be the first to state the obvious: You are going to hurt, and be exhausted, and not want to continue. But I can also tell you on behalf of myself and everyone else who’s ever successfully initiated an exercise routine with Fibromyalgia: It will help you.

Am I cured forever? Maybe. I have days where something strange will happen–a herx from my medicine, a day of severe stress, a storm passing through–where I will get a rush of pain that feels just like fibromyalgia, and leads me to think the mechanisms behind it may not actually be gone as much as they’re just not currently active. But I no longer suffer from its trademark symptoms. Even the type of cognitive problems I experience now, with the M.E. and Lyme disease, are different than that which accompanied the Fibromyalgia. And I no longer have chronic pain in all of my muscles and tendons, irritable bowel syndrome, or trouble waking up 10-20 times per night.

And I thank God for that, because if I had to deal with that terrible illness on top of the severe disease I already battle, I don’t know what my life would be like, or if I’d even still have one. I can only keep hoping that it never gets re-triggered, especially since there is practically no information out there about the reoccurence of FM in myalgic encephalomyelitis… I have the feeling though, that with all I’ve been through the past five years, if it were going to reappear, wouldn’t it have already done so?

I have fallen out of remission after a tough and stressful spring/summer. Thank you for giving me hope and a road map towards getting back into remission. I also shared your blog with family and friends. It’s so hard for them to understand what it feels like to be in this body. You did a great job of explaining it…..Best of Luck to you!

Until “someday” comes, I hope you can take advantage of all the information currently available to help you get through day to day life with a chronic pain condition, most of which is thoughtfully provided by fellow patients who share its reality. Your life, as it unfolds moment by moment, is the only one you’ll ever have, even when there is an illness, and you deserve to find what brings you joy.

A lot of this info is so incorrect. FM is never cured #1, studies are showing it’s not just problems with your muscles, joints tendons but central nervous system causing nerve fibers to go crazy and they are slowly connecting neuropathy to this and over 75% of fibro sufferers cannot exercise!

Just as thirty years ago there was only Myalgic encephalomyelitis, with its specific symptoms, but then CFS was coined and the patient pool became severely diluted and research has been contradictory and AWFUL ever since, so has the pool of Fibromyalgia been diluted. The information is not incorrect, it just stems from a time when people with fibromyalgia weren’t diagnosed at the drop off a hat, allowing millions into the diagnosis who don’t actually have it.

I know someone who was diagnosed with incurable cancer and the doctors told him he would be dead in six months.He declined treatment,sold his firm and went on a trip round the world with his wife and when he came back the cancer had miraculously disappeared.
It is never helpful to tell anyone that something cannot be cured.Maybe it can´t but it is still better to have hope.
I was diagnosed with fibromyalgia a couple of years ago and had a really bad time for 8 years, often not being able to leave my flat at all.But I,too, found that magnesium and exercise helps a lot and have been much better for over a year now. So please don´t discourage people – even scientists and doctors are at a loss sometimes and give explanations that may not encompass the whole truth.
Thank you,Rainbow, for taking the trouble to inform people, I can only say my experience has been pretty much the same as yours although I didn´t try Aloe Vera but I did grow and eat leaves of Jiaogulan.

My name is Elias and I have fibromyalgia. I had it in 2008 for about 6 months from February 5 (felt nauseous and dizzy, foggy at onset) to sometime in August 2008 and actually wrote a journal of symptoms. It’s now 2014 and here’s the crazy part. My fibro is back started on feb 10 2014 to current. It was completely gone for 5+ years. I mean zero symptoms and now it’s back. So I know it goes into remission. Only thing is I don’t have any reason why it came back and last time just went away on its own. I tried the antidepressants but didn’t like how they made me feel so I took nothing at all. Just went away. But I did exercise a lot on good days. Fibro sucks and caused a lot of anxiety the first time around. This time I have less anxiety because I know what to expect. Also crazy thing is my symptoms are following my journal symptoms from first bout exactly. The symptoms have a pattern or life cycle for me at least. When I was waking up with tops of my hands and feet numb and morning stiffness in my hands in journal is same as when I’m having it now. So basically it’s a timeline of sorts. It has a life cycle! I’m now in the stage where I am getting muscle twitches and muscle fatigue/ stiffness and nausea and getting tired from not sleeping right. I will be okay you just have to believe!

Elias, you are exactly right! It does come and go and can go away for a very long time. I do believe in total healing. However, I believe we need to continue on the same healthy course to “stay” well. I don’t believe it is not curable. How can a doctor say it’s not curable, but we don’t know the actual cause. It’s impossible to know there is no cure when you don’t even know the cause. So it’s complete bologna for doctors to convince people that there are always going to battle FM. I have been in remission many times and I know that mine comes back because I feel so good that I stop exercising, meditating, stretching and I am a type A personality, so I stress all the time. I love sugar when I’m stressed, so I know this is another big factor in my flares. I usually have all sorts of scary symptoms that eventually fade away. They used to last for 3 months at a time and then go away for about 6 months to a year. The last flare I had only lasted for about 1 to 1 1/2 months and went away for about a year and a half. Another time is was gone for 3 years. If you just relax through the pain, exercise, eat healthy, take what works for you, as rainbow said, and stretch while doing deep breathing; things will improve and go into remission. I think the most important thing to remember is, If you have been convinced that you will never get better and that you will battle this syndrome forever, and that it only gets worse; then, it will. But if you believe that you can get better, you will find ways of coping and find that your body is capable of healing itself when you do the things to help it heal. This time around I plan to make notes to remind myself to continue to stretch and keep an active healthy lifestyle to stay well. I hope this has encouraged someone else. And, know, that you can get better and you will get better if you believe it and pursue it.
God Bless! You are on your way to full recovery!

“If you just relax through the pain, exercise, eat healthy, take what works for you, as rainbow said, and stretch while doing deep breathing; things will improve and go into remission.”

Hi policewoman,

I know this comment isn’t specifically for me, but since you mentioned me in this post I want to reiterate that I NEVER said if you just live a “healthy” life and do what’s “right” it’ll go away. I don’t even think you’re suggesting I said that, but I don’t want anyone to half-heartedly see your comment and think I did. :)

Mine went into remission because that’s what it can do when caused by myalgic encephalomyelitis; that’s a known possibility in people with M.E. and secondary Fibromyalgia. I only purport the things in this post to suggest that IMPROVEMENT is possible with the above recommendations, because they helped me.

I don’t personally know the chances of going in remission for fibromyalgia caused by things other than M.E., so I won’t comment on that. I do not claim the above things to have cured me, because it most likely went away on its own. What my recommendations DID do, was help me manage my symptoms whilst I had them. A lot of people with FMS-symptoms caused by other things than M.E. do seem to experience periods of relief, just like a lot of people go into remission from cancer. I also believe Fibromyalgia today is very overdiagnosed, and this affects the outlook society has on it, and the research. A lot of people say it has a lifecycle like Elias did, and you. I’m sure the various triggers can affect how each subset responds, and to what.

So far, mine has been gone for seven years straight, with no relapses in between, even though I’ve been unable to exercise for years at a time, and had periods where I ate a bunch of sugar. Neither retriggered FMS, because my FMS was caused by trauma to the nervous system, like it is for a lot of people. FMS symptoms caused by other things will respond differently.

I’ll post your comment here, but I do not personally believe you can “think” yourself into staying sick, and I would personally never suggest that because I find that extremely harmful to tell people who could potentially be suicidal as a result of severe disease.

This illness is not your fault. Fibromyalgia is no one’s fault. The management of stress will help, but not cure it.

There, I’ll get off my necessary soapbox. If you want to get metaphysical, I think our soul chooses the path that’s going to help us to learn the most while we’re here. Sometimes that includes achieving recovery in order to follow other paths. Sometimes illness remains a part of our journey, our teacher. Both ways of life are valuable and have meaning.

I think we do have responsibility for what we CAN control. It takes a lot of strength to follow your own path when people are saying do otherwise, and I bet you are a remarkable person. It also takes a lot of strength to have tried these suggestions–often for years on end, since most people have–and accept the things that aren’t going anywhere, also when people are saying do otherwise. “The serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

Thank you for your words, and I hope both you and Elias experience long remissions from your symptoms.

My son (33) possibly has fm. He has been in extreme pain for far to long, approx 6 years. Did you go to a rhematologist for a diagnosis? I have recently started him on MSM and am hoping that this will help him. We will try the exercize and stretching that you have suggested. Thanks for the pillow and foam bed topping suggestion. We figured out the foam bed but we are still searching for a proper chair for him to sit in and a good pillow. Thanks for your info, it is so helpful to know that you are in remission and possibly my son may be as well. Than jar taking the time to write your story. Bernadette

“Possibly” worries me! Since fibromyalgia is very overdiagnosed these days, I highly, highly suggest he rule out Lyme disease, using IGeneX laboratories in specific, as the other brand of tests 99% of doctors use is so inaccurate even the CDC states they’re not effective, and that because of this, rates of Lyme disease may actually be 10 TIMES the rate that is KNOWN. Plus, most doctors won’t check for other infections spread by the same ticks, which can also be terrible. (He can go to http://www.igenex.com, call them and they will actually mail him the kit to bring to his doctor.) If he’s tested for those infections through IGeneX and it comes back negative, then there’s a low chance of Lyme and its passenger friends being the cause. But it’s important to PROPERLY rule those out, because Lyme and the infections that travel with it inside the tick can be progressive and fatal without treatment (a harsh truth, but a truth nonetheless). I’m mentioning this because again, nearly everyone I know with Lyme disease was first diagnosed with something like CFS or FM before finding out it wasn’t FM at all, and you might not hear this from your doctors who aren’t familiar with it. I hope it’s not something as awful as this! But if so, there are treatments available, whereas fibromyalgia only has a symptom-based approach like the ones I mentioned above. May you and your son find fulfillment and peace, whether coexisting with disease or not. Thank you very much for reading my post, and sharing your thoughts with me.

Over the last 16 months i have worked hard to make improving my health number one. Having CFS, FM, IBS, Restkess Lefs and sleep time is only a bother. I decided to do a little changes on my own after 7 meds were not doing the trick. I got horribly sick from a hamburger and life changed. I was sick and tired of being sick and tired.
I started eating clean in processed foods. Fresh. My stomach started feeling better. Then I started dropping weight. Then I olunged in and started doing a little walking then hiking then the gym and a kayak. Wow. I was having great energy and the weight coming off. I still have days of pain but I don’t have near the pain I endured while I was at peak. I no longer take meds with the occasional something to sleep because I’m up all night. I try not to be in a fog and can tell when my body is ready to shut down and I stoo and let it recover. No exercise equals a painful day the next day.
The bed has been important to me too. No doubt. I will try a few of your tips because i don’t this FM has gone away I think I’m working hard to keep it a couple miles behind me.
Thanks for your side of the story as I was on line trying to find a link for a friend to understand my FM and how I am kinda I a remission but not really stage.
Blessings to you

CDC agrees that M.E. is not the same as CFS:

"Various terms are often used interchangeably with CFS. CFS is the preferred term because it has an internationally accepted case definition that is used in research and clinical settings.

The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that does not currently exist.

Chronic active Epstein-Barr virus (EBV) infection (chronic mononucleosis) was thought to be the cause of CFS during the 1980s, and this association is now known to be rare.

However, post-infection fatigue syndromes have been associated with EBV and other infectious agents. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS." -- Centers for Disease Control and Prevention (CDC), US source